How can primary care enhance end-of-life care for liver disease?

Qualitative study of general practitioners’ perceptions and experiences | BMJ Open

Liver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners’ (GPs) perceptions of their role in managing end-stage liver disease.

GPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients’ social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area.

Full reference: Standing, H. et al. (2017) How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners’ perceptions and experiences. BMJ Open. 7:e017106.


A qualitative study exploring use of the surprise question in the care of older people

Elliott, M. & Nicholson, C.A. (2017) BMJ Supportive & Palliative Care. 7:32-38.


Objective: The question “Would you be surprised if this patient were to die in the next 6–12 months?” has been included in UK palliative care guidance with the aim of supporting the identification and care planning of those nearing the end of life. Little is known about how the surprise question is utilised in the care of older people within primary care. This study sought to explore the perceptions and experiences of general practitioners (GPs).

Conclusions: Greater understanding is needed as to the difficulties experienced by GPs when assessing prognosis in older people. We propose a thematic model which could support GPs by focusing assessment on the supportive and palliative care needs of older people nearing the end of life.

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End-of-life planning with frail patients attending general practice

Dunphy, E. J. et al.  End-of-life planning with frail patients attending general practice: an exploratory prospective cross-sectional study  British Journal of General Practice. 2016 e661-e666

Background: End-of-life planning means decision making with patients, formulating and recording decisions regarding their end-of-life care. Although clearly linked with benefits including improved quality of life, reduced hospital admissions, and less aggressive medical care, it is still infrequently undertaken and is regarded as challenging by healthcare professionals.

Aim: To ascertain the feasibility of improving the identification of patients at high risk of dying in general practice and the acceptability of providing patients identified with an end-of-life planning tool.

Design and setting: Exploratory prospective cross-sectional study in four general practices.

Method:  Patients at high risk of dying were identified during routine consulting by their GP, using the Supportive and Palliative Care Indicators Tool (SPICT). Patients identified were invited to participate, and provided with Think Ahead — an end-of-life planning tool, which has been used previously in general practice. Participants completed telephone surveys, assessing their response to Think Ahead, and the acceptability of the GP raising end-of-life issues during routine consulting.

Results:  Provision of Think Ahead to a purposive sample of preterminal patients identified by GPs was feasible, acceptable to most patients, and somewhat effective in increasing discussion among families and in practice on end-of-life planning.

Conclusion:  The SPICT and Think Ahead tools were mostly acceptable, effective, and enabling of discussions on end-of-life care in general practice.

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Providing end-of-life care in general practice

Mitchell, S. et al. Providing end-of-life care in general practice: findings of a national GP questionnaire surveyBritish Journal of General Practice. 2016  Aug; 66 (650): e647-e653

Background: With increasing numbers of people living with complex life-limiting multimorbidity in the community, consideration must be given to improving the organisation and delivery of high-quality palliative and end-of-life care (EOLC).

Aim: To provide insight into the experience of GPs providing EOLC in the community, particularly the facilitators and barriers to good-quality care.

Design and setting:  A web-based national UK questionnaire survey circulated via the Royal College of General Practitioners, NHS, Marie Curie, and Macmillan networks to GPs.

Method: Responses were analysed using descriptive statistics and an inductive thematic analysis.

Results: Responses were received from 516 GPs, who were widely distributed in terms of practice location. Of these, 97% felt that general practice plays a key role in the delivery of care to people approaching the end of life and their families. Four interdependent themes emerged from the data: continuity of care — which can be difficult to achieve because of resource concerns including time, staff numbers, increasing primary care workload, and lack of funding; patient and family factors — with challenges including early identification of palliative care needs and recognition of the end of life, opportunity for care planning discussions, and provision of support for families; medical management — including effective symptom-control and access to specialist palliative care services; and expertise and training — the need for training and professional development was recognised to enhance knowledge, skills, and attitudes towards EOLC.

Conclusion: The findings reveal enduring priorities for policy, commissioning, practice development, and research in future primary palliative care.


Palliative care consultations in primary care

Hoek, P.D. et al. BMJ Supportive & Palliative Care. Published online: 17 June 2016


Background: Expert consultation supports general practitioners (GPs) in delivering adequate palliative homecare. Insight into consultation practices from a GP’s perspective is needed in order to shape consultation services to their wishes and needs.

Aim: To explore palliative care consultation practices from a GP’s perspective.

Design and setting: Cross-sectional web-based survey among all GPs (n=235) in the region of Nijmegen, the Netherlands.

Methods: Our questionnaire contained questions about the delivery of palliative care by GPs, their consultation practices and satisfaction with current services. Questions consisted mainly of 5-point Likert scales. We transformed these scales into numerical values to calculate mean scores. Linear mixed models for repeated measurements were used to study differences in scores.

Results: GPs most often consulted informal caregivers (mean score 3.6) or fellow GPs (mean score 3.3). Physical problems were discussed the most (mean score 3.5), while social and existential issues were discussed least (mean score 1.9 for both). In their choice of a particular consultation service, GPs considered the quality of the provided advice to be the most important factor. GPs were satisfied with current consultation services, with fellow GPs receiving the highest satisfaction scores (mean score 4.6). Finally, when recalling their last palliative patient, most GPs started requesting consultation during this patient’s last month of life.

Conclusions: Next to informal caregivers, GPs preferably seek advice from fellow GPs. Physical issues receive much attention during consultations; however, other vital aspects of palliative care seem to remain relatively neglected, such as social and existential issues and a proactive care approach.

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Caring for frail older people in the last phase of life

Geiger, K. et. al. Caring for frail older people in the last phase of life – the general practitioners’ view. BMC Palliative Care. published online 2 June 2016


Frail older people are an increasingly important group in primary care due to demographic change. For these patients, a palliative care approach may be useful to sustain the quality of life in the last phase of their lives. While general practitioners (GPs) play a key role in the primary care for older patients, general palliative care is still in its infancy and little is known in Germany about caring for frail older people towards the end of life. This study aims to explore the tasks and challenges regarding the care for frail older patients in the last phase of life from the GPs’ point of view, and the latter’s perception of their own role and responsibilities.


Explorative qualitative study based on semi-structured in-depth interviews with 14 GPs from urban and rural regions in Lower Saxony, Germany. Analysis was carried out according to the principles of Grounded Theory.


The GPs’ key commitment “caring for frail older patients until the end” as an integral part of primary care was worked out as a key category, flanked by central issues: “causal conditions and challenges,” which include patients’ preconditions and care needs as well as communication and cooperation aspects on the carers’ level. “Barriers and facilitators within the health system” refers to prerequisites of the German healthcare system, such as high caseloads. Regarding “strategies to comply with this commitment”, various self-developed strategies for the care of frail older people are presented, depending on the GPs’ understanding of their professional role and individual circumstances.


The GPs show a strong commitment to caring for the frail older patients until the end of life. However, it is a challenging and complex task that requires significant time, which can take GPs to their limits. There is a great need to improve patient—and family-centered proactive communication, as well as interprofessional cooperation. Strengthening the team approach in primary care could relieve the burden on GPs, especially in rural areas, while simultaneously improving end-of-life care for their patients.

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What is palliative care?

Palliative care is a core part of the role of a GP. It can and should begin as early as possible in a patient’s course of illness, but as GPs we may individually become involved at a variety of points without necessarily having had the opportunity to build a prior relationship with a patient. This can be challenging, particularly if seeing a patient for the first time when they are in the last days of life. This article aims to explore the different points at which palliative care may begin and summarise new guidance that may inform management.

Reference: InnovAiT: Education and inspiration for general practice. Published online before print May 12, 2015